Your Health & Money Are At Stake

How To Rate Medical Information on the Web

If you’re struggling with a medical condition, the treatment decisions you make will be based in part on the information you gather from your doctors, family, friends, books and websites. Your job is to take all that information, sort the good from the bad, the credible from the absurd, and make intelligent decisions. Make no mistake about it. Your health and your funds are at stake.

Consider the case of Jenny. She had IC for a few years and was struggling with pain. A friend suggested that she visit a chiropractor who could miraculously “treat any medical condition.” She said “yes,” drove 90 miles, had an examination by someone completely inexperienced in IC that triggered even more bladder pain and then bought hundreds of dollars of useless herbs and vitamins.

Brian spent $29 buying a book online that said it would share the “cure” IC. After purchasing the book and reading it, he felt scammed. It blamed IC on salt, offered a simple low salt diet that he could have printed, for free, from many websites. It also offered no credible proof or research studies that showed that salt caused IC or that a low salt diet could “cure” IC. Yes, salt on a wound hurts. Reducing salt makes sense. But it’s not a cure.

Mary heard about an acupuncturist who could “heal” her IC. She spent more than a thousand dollars for phone consultations and herbs and experienced no improvement.

Nancy was told by a doctor in Colorado that the only treatment for IC was a surgical procedure. She paid thousands of dollars for a medical device to be implanted (i.e. Interstim) that was not FDA approved for IC and suffered from serious surgical complications. When she went to another urologist to discuss her complications, she learned that there were other less expensive and less traumatic treatments that she could have tried that she was not told about.

Were these wise decisions? Of course not. Each patient forgot to be skeptical and to gather information from multiple sources, especially about potential “cures.” Your first line of defense is to gather information from reliable sources… especially when using the web. Why? In the past ten years, we’ve seen it all. Websites that claim that they can cure for your IC if you buy their books. Vitamin distributors eager for new customers who pretend to be patients sharing their success stories. Alternative practitioners sharing wildly successful patient testimonials. And, yes, even well meaning patients who are sincerely trying to help others but are unfortunately passing along poor information. You, the reader, must protect yourself by verifying that the information you have is accurate, factual and credible.Please don’t fall victim to these scammers. Be skeptical.

You must understand that much of the information you might read or hear, whether it be from companies selling you things or patients sharing their success stories, is the least reliable form of information to base your personal medical care on. Here’s a good rating system that you can use to verify the quality of the information you are reading and, more importantly, perhaps relying on to make your medical decisions. Source: Agency for Health Care Policy and Research

Score of A to A- (Most Reliable): Statements are supported by one or more randomized controlled clinical trials, ideally at multiple locations and published in a peer reviewed journal.

Score of B to B-: Statements are supported by a well-designed and controlled research studies, ideally published in a peer reviewed journal

Score of C to C-: Statements are supported by less valid research studies, such as comparative, correlational or case studies or the opinion of a single experienced expert, such as a physician.

Score of D: An unbiased testimonial that reflects the pros AND cons of any particular approach.

Score of F (Least Reliable): Statements consist of anecdotal information, biased testimonials from patients or manufacturers, back-of-the-magazine paid stories, ads and TV infomercials. The vast majority of websites and several patient written books are “F’s.”

Thus, we think it’s important to focus on information that is supported by strong, credible research. If a company has NOT paid out the money to do a study that proves their claim, we suggest you be skeptical. If a website that proclaims a cure is not listing research supporting their claim, be incredulous. If someone says that they can cure IC, ask for proof… hard, written (usually in a medical journal), factual proof.

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My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders.
As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life.
An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions.
With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.

Interstitial Cystitis Network

The ICN is a health education company dedicated to IC and chronic pelvic pain syndrome. Rated the top patient website dedicated to IC in peer reviewed studies by Harvard (2011) and the Univ. of London (2013), our goal is to empower, educate and encourage patients and providers!